Not really a question I guess. But we have today had a case conference with the rehab unit which my husband is in. We are in month 4 and a something since he left home. He has been in the unit for about 3 months. When he went in he couldn't stand, balance, his left side was paralyzed, he couldn't speak well he would get stuck on a loop repeating one word. He was still on a "small soft foods" diet" with his drinks thickened. Catheter in and without bowel control. He couldn't read, or write.
Today he can do all these things...wals with a stick, he can walk 200m in a session. With someone on his strong side as a guide. His steps are fairly small and shuffly but this can be worked on. He can do 4 steps. Up to 4 times up and down with a railing on either side. And he can use his phone and tablet. He can also read short things and do a bit of (not very legible) writing. He can also wash and dress himself, toilet etc.
So why when we asked for a date of discharge today did they say he was "halfway"? We asked about the original target and they lied and said they can't remember it's "on our system". We know it's the end of May.
Everything has been shambolic. He has not seen a neurologist in his time there or been assessed by one since the Acute hospital. Today a random guy in a suit appeared claiming to be the neurologist. We know he's not because the last one went off on stress, the next disappeared and there hasn't been one since aside from a jumped up yappy baby doctor who is the general doctor.
We were told that they had spoken to a neurologist at the main hospital (not really a consultation...just the neuropsychologist who we have heard little to nothing from). They want to put him on levadopa which I understand to be a type of dopamine because he is slow moving and something else...which is his condition.
We can't get a straight story about anything out of them. We can see my husband sort of going quiet and depressed because they are doing less with him. We figured that the end of may isn't far. Today they alluded to the fact that he would be there for potentially 3/4 more months. We think they are trying to cover themselves. They have said it depends on whether we can give him the dopamine in community or if it has to be in the hospital. They are NOT giving him that drug to cover their backsides and to tick a box. We won't allow it.
So we want to discharge him and work out a therapy plan out of the hospital using both NHS (to tick the box) and private therapists. I mean he sits all weekend doing nothing. He says he's bored stiff. Not even a walk around the ward or anything. Just up, dressed, toilet, chair. No wonder come Monday he's sore and tired and not as good as he should be. I'm fed up with this hospital and they have developed a belligerent attitude towards our family because we won't sit back and leave them alone to do whatever they want.
No information on treatment plans, goals, all the things that they claimed would be happening and we have been ignored, badmouthed and avoided... nothing but nonsense week in and week out.
Thoughts? How would we go about this? I'm going to contact the nurses at headway of course. But we are certain there is some sort of borderline medical malpractice going on. Not the therapists, but the doctor and his nurse cronies.
Apologies for any typos and we'll done for getting through to the end of my rant. 🎉