Apart from 30 years in nursing care, I now have experience on the other side of the bench. This has included my own condition Lupus and other autoimmune conditions but also now my son with Graves and APS. I sit regularly in waiting rooms listening to other patients, they are mainly happy with the clinical care they receive but the support and advice about daily living remains lacking.
In my area there seems to be no nurse specialist for autoimmune conditions or suggestions for daily living and young doctors never seem trained in asking about lifestyle choices or how to do a physical examination. Neither myself or my son have been examined in 18 months.
An example of this is my sons care. He is 29. in May diagnosed with Graves, then got a DVT. Then diagnosed with APS. Since then he has had no further advice just medication. He is constantly asking how to cope with the fatigue, nausea, migraines, hunger, joint pains and which conditions these relate too, but these are not answered. Last week he was admitted to Glasgow general follow severe migraine pins and needles and slurred speech. Due to APS they did a CAT scan. Luckily clear. Even with this knowledge today they would not refer him back into neurology.
We have looked most things up ourselves and used common sense. he has followed my experiences, but surely the expenditure the hospital would pay for a nurse specialist or occupational therapist would be worthwhile you all of those patients.
I would be pleased to hear others thought about your areas.