Information and support

Being diagnosed with myeloma can be devastating. Patients and their families are faced with a cancer that currently has no curative treatment, with symptoms and complications that are traumatic and debilitating, and an increasingly complex range of treatment options. Often, patients, their families and carers have never heard of the disease until diagnosis. This feeling of devastation can be further compounded when patients and their families meet healthcare professionals who also know very little about the disease.

Provision of information and support for patients, their families and carers is essential in assisting them in coming to terms with a diagnosis and beyond. It is central to helping patients make informed decisions, should they wish to make such decisions themselves, about treatment options and about how to live with myeloma.

It is important to be mindful of the information and support needs that your patients, their families and carers may have, which include:

• Provision of information. Information-seeking behaviour is a strategy that many people use as a means of coping with, and reducing stress, throughout their cancer experience
• Good communication with and between health care professionals. Effective communication is widely regarded to be a key determinant of patient satisfaction, compliance and recovery
• Support from family, professionals, support groups and other patients
• Expert management of symptoms and complications
• Continuity of care and coordination of treatment
• Financial advice such as entitlement to benefits, impact of loss of earnings