Just before Christmas five years ago, I was diagnosed with Rheumatoid Arthritis at an Outpatient clinic in the Department of Rheumatology by a Professor of Rheumatology. The same morning I was given at least 5 booklets on various aspects of the illness and the medications prescribed. They included all the relevant contact numbers in and out of hours. The side effects of the medications were explained to me. I was even enrolled into a research project that was being run in the department.
My son was diagnosed with hypomania in a very busy Accident and Emergency department during working hours. The Registrar spent a fair bit of time speaking with him and spoke with his father and me briefly as well. Medication was prescribed and his care was handed over to the Community Mental Health Team (CMHT). Aside from ‘Hypomania’ nothing else was mentioned to us. On the first day, another Registrar along with a Nurse Specialist visited us at home and asked us a few details about him. They did say that Olanzepine might cause him to put on weight. We were not given any information about the illness or the implications of it for the family. Neither were we given any reliable list of resources that we could access ourselves. A few days later I spoke with the CMHT Registrar on the phone and asked him specifically what I need to know. I distinctly remember him saying that sometimes it is just a one-off aberration in behavior. So, not to worry too much.
The same team came to see us a couple of weeks after he passed away and then mentioned that 1 in 4 patients with Bipolar will commit suicide. Did we not deserve to know this earlier on? None of the websites mention it clearly either. I understand that unnecessary worry is avoidable but I feel this is a high enough incidence for it to be mentioned to the family especially if the care is taking place at home after a newly diagnosed illness of this serious nature. Does it cost that much to get some basic leaflets printed? He was never actually seen by a Consultant. Does it cost that much for one direct consultation with a Consultant Psychiatrist?
So, parents are not well equipped with support or information and Psychiatrists loose the patients in the system. Who takes ownership of these patients? How much is their life worth?