Learn to communicate with health workers

and try to be their partner when making decisions

Your situation does not have to be tragic and without solution, but it definitely is serious and from the perspective of your life absolutely exceptional. Therefore you have a right to have health workers approach you in such a way. They should give you and the people around you exceptional care. Mainly they should be able to provide regular and flexible contact and effective consultations. They should be able to do that even when the topics in question are seemingly minor and insubstantial, and not only when they are crucial questions about radical treatment. Even the most dedicated health workers and best professionals are just people. They may make mistakes, they may forget. Also, the sequence of healthcare often does not work perfectly. Thus do not blindly rely on the healthcare system, rely mainly on yourselves. Try to optimize the medical processes to your needs or the means of those you care for.

Try to be – as patients and as relatives – informed by doctors and other health workers alike, and, if possible, at the same time. Informing separately and differently – a “weaker” version for the patient and the “tough” version for the relatives – creates an air of distrust, misunderstanding and deteriorates the overall communication between the patient and their surroundings.

Be in regular contact with “your doctor” and continuously inform him about changes in the patient’s health and about the amount of difficulties they are experiencing. Ask him for explanations of the causes of specific difficulties and also for recommendations about what to do to moderate them. It is important for you to be certain that you are doing the right things and that you have not overlooked anything.

You have a right to strive for the conservation of natural social roles and for life in the natural home environment. Try to make use of all field and ambulance services both health and social (nursing service, social help). Healthcare has developed several methods that allow a patient, even when seriously ill, to stay at home instead of in a hospital.

Actively question your health workers not only on the character of the disease, on the prognosis, and on possibilities for treatment, but also on services and possible means of support. Trust health workers, but do not let yourselves be manipulated. You have not only the right to ask for help, but also the right to refuse the services and actions that do not suit you. Try to maintain your crucial position as the one who decides what is happening to you, when, where and why. Take part in the scheduling of your care, and keep control over what is happening – over both the fight (for instance treatment by cytostatics and radiation) and the nursing.

Consult your doctor on what literature or internet websites provide adequate information about your sickness and its treatment. Information that is partial, wrongly understood, or taken out of context does more harm than good, but adequate information is a necessary requirement for inclusion of the patient and their caregivers as partners in the treatment process and support programs.

Help can be offered by patient associations dealing with “your” sickness. Their number in the Czech Republic is finally growing – try to contact them (you can use the address book czech links and links in other langugages). An example is the League Against Cancer or Mamahelp – an association striving to help women with a tumorous breast disease.

See also these links:

• Communicate with people around you
• Be active
• Coping with pain
• Coping with physical difficulties
• Coping with psychological difficulties
• Good departure

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