| British Journal of Haematology suggest www.amyloidosis.org web site for patient information and support.
The full set of Recommendations are:
• The diagnosis needs to be communicated honestly to the patient with the minimum of delay.
• Patients and their partners/carers should be given time to ask appropriate questions once they have been given the diagnosis
• At the end of a consultation, it is recommended that patients and their family/carers are given written material which provides information on the condition.
• Patients need to be informed of the names of the key members of the specialist team or teams who are in charge of their care, and importantly, who is responsible for coordinating their care.
• The management plan needs to be communicated simply to the patient and his/her carer and should be clearly written in the case record so that the information is readily accessible to other members of the multi-disciplinary specialist team.
• Patients and their families should be cautioned about the amount of unregulated information accessible on the internet; they should be given recommendations to access appropriate sites, such as http://www.amyloidosis.org.
• Patients should be given the opportunity of receiving more than one medical opinion.
Read more at BJH_Guidlines_for_Amyloidosis.pdf |
