When you are very ill many people including health professionals may be involved in your care. Each of them will contribute something to your care. It can be frustrating if they haven’t spoken to your doctor for an update. This may mean that you have to tell your story many times to different people.
You can have a serious illness for a long time. You may have difficulty remembering the details of all that has happened. Keeping a health diary can help. Write down the date with what symptoms you are having. Include your medications and what helps. Also put in the dates of appointments and any questions you have. With everything written down you can show it to anyone who needs to know. This can help everyone to see what is happening. If you keep a diary, then tell everyone involved in your care.
Sometimes visiting nurses keep nursing records in your home. Everyone needs to know this as well. The management of your care works best when you, your carer and your health professionals are working together. There are ways that this can be organised. Sometimes a case manager will coordinate your care. The palliative care service, community nurse or GP may do this. This can be overlooked though, and things can get confusing.
You may think that this is happening in your case. You or your carer can ask your GP to arrange a case conference or family meeting. This will bring together everyone who is involved to better coordinate your care and understand what is happening. Your carer will often be the main person coordinating your care at home. They need to be involved in anything to do with your care.