Rachael received a follow up letter from Dr E after her appointment at SR Hospital. In the letter he said how pleased he was to see Rachael again although he thought that she was looking tired.
He went on to say that he and Rachael had talked about the difficulties that she has with having enough feed and using her NIV as well. He understands that Rachael has been losing weight and that the community dietitian has altered her feed regime but this hasn't been of any benefit yet.
He then referred to the problems that Rachael has with her sleep. He thinks that her sleep could be disturbed due to her medication or pain, particularly around her shoulders. There is also a tendency for her thorax to slip to one side whilst sitting in her chair. He is uncertain about what sort of co-ordination there has been to try and improve her seating comfort.
He then mentioned that Rachael's bladder is controlled with the suprapubic catheter and although she struggles with her bowels she is opening her bowels every one to days passing soft stools.
Dr E knows that there was a clash of opinion between Rachael and CB from the hospice regarding end of life discussions. He thinks that it may be helpful to get the hospice team involved again to see if they can help Rachael with symptom control as he is struggling to give any further advice.