Breast Cancer Care’s vision is that everyone with a diagnosis of breast cancer receives the best treatment, information and support.
However, Breast Cancer Care has identified that people with secondary breast cancer may often receive inadequate care. We have developed a set of standards which aim to:
- ensure you are aware of the care you should be receiving
- offer suggestions as to how to get this care for yourself
- explain how you can take action to drive up standards locally.
As a person with secondary breast cancer you should:
- have access to a clinical nurse specialist, at and from the point of your secondary breast cancer diagnosis onwards. They will be knowledgeable about the disease, treatment and support needs of people with secondary breast cancer. This person will act as your 'key worker': co-ordinating your care, acting as your advocate and providing/signposting you to support and information
- receive a multidisciplinary team approach to your care. All healthcare professionals who contribute to the medical and nursing management of your care should meet regularly to discuss your case, so that you receive the best care for you. Your team should include members of the oncology and palliative care teams
- experience continuity of care between the hospital and community services. Communication between the hospital-based team and your GP (local doctor) should be as efficient as possible using different methods of communication to ensure your GP is kept informed of your treatment and care. Your GP should be informed and kept up to date about your condition and be able to provide support and care when appropriate
- be given timely information including a care plan, on all aspects of your treatment and care both verbally and in writing and be clear on the purpose of your treatment, the side effects and potential impact on wellbeing. Your information needs should be assessed on a regular basis and support should be provided alongside all information given
- have your emotional wellbeing assessed on a regular basis and have access to the appropriate level of psychological support. This should be when you need it, but particularly at diagnosis, when the cancer progresses and at the end of each treatment
- have access to information on support services both nationally and locally. This should include the opportunity to meet/talk to others with secondary breast cancer. This could be online, on the telephone or face to face
- have access to expertise in palliative care, symptom control and ongoing management of troublesome symptoms. You should also be provided with information about end of life care when appropriate
- have access to support and guidance on talking to partners, family, friends and children, about the experience of living with secondary breast cancer and the impact it has on others. Your partner's and family's support and information needs should be assessed separately to your own by a healthcare professional involved in your care. They should be offered/signposted to information/support services specifically for them
- have access to expert financial and employment advice. This should include information about your eligibility for relevant benefits and your rights at work under disability discrimination legislation
- have access to appropriate treatments and be made aware of the availability of clinical trials for which you may be eligible before treatment is started or changed.
The standards are the result of the work carried out by our Secondary Breast Cancer Taskforce. This was a national coalition of healthcare professionals, charities, policymakers and people with secondary breast cancer. The work of the taskforce led to the formation of our campaign to improve the care received by people living with secondary breast cancer.